More musings

One of the problems with me being flat on my back, so to speak, or at least, with very little to think about when compared with my normal chaotic existence, is that I have got too much time to think about things.

More specifically at the moment, my musings are all Chemotherapy related. I don't yet know whether I will be given Herceptin, and if so whether this is instead of Chemo, or after Chemo, or even at the same time as Chemo, so I have managed to put that to one side.

What is bothering me at the moment is whether or not I will lose my hair. Ridiculous, I know, to be worried about hair when I should be worried about whether the cancer is anywhere else in my body, but there it is. It is a concern.

I don't think it is just a vanity thing, (I hope so anyway), as one of my major concerns is if I do lose my hair, how it might affect the children. They have been remarkably robust so far, but when I am clothed I don't look any different to them. Seeing mummy without hair might be a bit scarier or stranger for them.

Apparently I can get a doll which turns inside out into a lady with no hair, but frankly it sounds scary to me! It might help the children though, which is what matters.

I have been researching the "cold cap" and it seems, like everything else, that whether or not is works, and to what extent, varies from person to person, so there is no hard and fast answer. Hopefully I will learn more when I meet the Oncology team on the 10th October or thereabouts. Not all hospitals (as far as I understand) have access to scalp cooling and there are lots of suggestions of things to do and not do whilst using scalp cooling and during chemo that I don't know if I can live with, such as not washing my hair every day - fairly untenable to someone who has washed their hair every day for 20 years. 

We live on a pig farm, and I have horses, therefore certain smells linger, shall we say, despite wearing hats. My hair is also very fine and gets greasy really really easily. 

Having the cold cap may also double the length of time each treatment takes - 3 to 4 hours rather than 1 to 2, and hair can't be washed for 24hrs afterwards. There's a whole list of things here.

It seems like such a faff, to someone who doesn't do anything more than straighten her hair on a daily basis. I really don't know if I am patient enough.

The cold cap won't do anything for the loss of eyebrows, eyelashes etc either, so I'll have to learn some new make up skills as well it seems. Not before time in many ways.

On the plus side, I won't have to worry about shaving my legs for a bit will I?

Little things, little things, sent to try me.

I am still debating having all my hair cut off for charity as a way to regain control. Apparently I could even donate my hair to a children's charity (Little Princess Trust) that provides wigs for children suffering from hair loss through cancer treatment. Now I feel properly chastened - at least I have reached 33 years old before getting cancer.

Perhaps I should raise money for this charity anyway by cutting my hair off, and donate it too? 


Perhaps I'll take it one step at a time and be sensible. Try the cold cap, and if it doesn't work, or if I can't bear it I'll have the whole lot cut off.

I just don't know. Can someone please make the decision for me?

Housework is bad for you...

Literally.

In fairness, my back was feeling a little delicate last week despite being seen by my lovely Chiro the week before. Whiplash and associated torsion at the end of May has a lot to answer for. (It has been my year, didn't you know?) However, over the weekend it got worse but I was determined to go to work this morning. 

That is, until I loaded the dishwasher. One plate too many and *ping*, or possibly *pop*, went my back. Ouch.

Ice pack applied for 10 mins then hot shower and hot water directed to my lower back, but to no avail.

Not impressed, but I was going to go to work until my husband, quite rightly, took matters out of my hands and rang my boss to tell him I wouldn't be going in. Lotting up 900 lots of machinery in the pouring rain probably not the best idea.

I have been hoping that I might get there tomorrow for the actual sale, which is the fun bit, but when I accidentally picked up my son this evening (he launched himself at me and it was self defence), it really went *twang* and I am even worse. 

I could sob.

My body feels like it is rather letting me down at the moment. I am so annoyed with myself, as it is very unlikely I will be going anywhere tomorrow at all, except maybe the Chiro is someone else will drive me. Not that I think he'll be able to do anything to me as it is too damn sore. 

I do have an appointment booked for Wednesday, which is just as well. I predict that it will end in acupuncture, which don't get me wrong, is brilliant, but I have had my fill of needles at the moment. At least I won't be able to see them this time round.

Botheration.

On the plus side, I haven't seen my husband laugh so much in ages - just wish it wasn't at me!!!

I am not spam!!!!! Updated

I am, as you can tell, irrationally annoyed that www.blogger.com think I am spam.

I'm not, and therefore am going to have to try to set this blog up somewhere else - I've been waiting for 10 days for blogger to unblock me, and they have started the whole process over again.

So, watch this space if you would like to continue to follow my story - I shall delve into the world of wordpress.com or any other alternative I can find.

If you have any recommendations please feel free to comment below.

Update
I have set up a Wordpress blog, and am in the process of copying everything over. The problem is, I like using blogger. It is easy.

So, as I have been unspammed today, I'll give it another week and if I have been re-spammed (my new word of the day) I shall make the move.

Indecisive. Moi?

Maybe. 

Here we go again

So, I have another date. Finally. 

After much chasing and begging and offering to pay. The hospital is hectic, and I am very grateful that they have been able to book me in for a full axilla node clearance on 29th September. The day before my daughter's birthday.

Hey ho.  At least I should be able to cook a birthday cake before I go in. The main part isn't until mid October, so all being well I should be well enough for that and won't quite have started chemo. Bets are on as to whether I shall have to start on my birthday, which is the 16th.

Other news? Well the larger stage 2 cancer has come back as HER2+ 3+, which I think in essence means HER2 positive, which I think means I might be given Herceptin, but it will depend on the results from the full clearance which will arrive on approx 10th October. 

Suddenly, we will be three months down the line from first hospital appointment.  A quarter of the year. Where the hell has that gone? Scary.

So, next week. I have two auctions to do. One on Tuesday and one on the Friday, and I am determined, come hell or high water to do them both before I go back on official sick leave.

Stubborn, me? Nooooooooooo. Anyway, I may be biased but I think that stubbornness can be an extremely good trait to have....

I'm a Chocolate teapot

.....short and stout.....

Well, maybe not that stout, but "chocolate teapot" is about how much use I feel I am at the moment, anyway, at work.  I have the concentration span of a gnat and am all over the place, emotionally. Not that surprising, but it is so not me. I hate it.

I hate sitting at work, trying to organise everyone and everything for when I won't be there. 

Everyone has been lovely, my boss has been very kind and supportive, but thinks I am nuts for trying to work between now and my operation. Am I? I don't know. I am just desperately trying to feel normal but that just isn't going to happen, not really.

I still don't have an operation date, which is frustrating. I have contacted my consultant and asked about paying for the operation privately, which he is loathe to let me do as I dont have  insurance. I used to but cancelled it a while ago and although I'd thought about getting it again I hadn't gotten round to it. Whoops. 

What I have explained to Mr Pain is that I am anxious that we don't have too long a delay for fear of letting the damn disease spread any further. I know the breast cancer tumours are out, but what if it is being pumped around my body and starting to spread? He is still pushing for a surgical date, but can we get one before the end of next week? I genuinely do not know.

I probably sound like a total hypochondriac but I just cannot help it. I am a one woman pity party tonight, sorry.

It is the waiting. It is driving me mad. Hopefully, it is only temporary. The cancer and the insanity both.

Distractions

All in all, despite everything, it has been a lovely weekend. My sister and her husband visited from Gloucestershire, we had a BBQ, tired the children out, and I have actually had a chance to spend some time with my husband. Much needed too, after this week.

Tomorrow, I shall go to work, which will be another welcome distraction and try and resume some normality at least for a few days.

I also have to telephone the hospital to chase up my next surgical appointment - I really really need a date to work to. Not only do I have various work commitments coming up, but it will also be better for me from an emotional point of view if I have a date, and a plan.

What's the song Dory sings in finding Nemo? Just keep swimming, swimming, swimming? Something like that. 

Well, my version is a bit different: Just keep living, living, living. 

Scared as I am, I cannot afford to let this disease get a grip on me in any way. I refuse to give in to it either mentally or physically. I refuse to let fear paralyse me and make me, for the want of a better word, impotent, in terms of failing to make the most of what I have right here, right now otherwise what's the point? 

I have been battling all weekend to try and ascertain how I feel. A friend of mine, who is a Doctor at GOSH and specialist in palliative care asked me very directly how I felt about having had a breast removed and how I feel about the scar.

This is something I have been avoiding thinking about since the operation, truth be told so it was a bit of a shock to suddenly have to think about it and answer a question, and I don't think I did so adequately. I still haven't really come to terms with it but on the surface at leastI accepted the fact that the breast had to go very quickly - a means to an end and a cure, we hoped. 

So, how do I feel about it? Sad and angry. Sore, upset, and of course, scared. Do I feel like I have been "mutilated". Well, a bit, yes. After all, my scar is over eight inches in length and although it is healing well it isn't exactly pretty. What is getting me through it? Have I said I'm cross? 

It's not just anger getting me through of course, not by any means. My wonderful husband, my fabulous children, my friends, my family, my list of things I want to do, my horses, my dogs, my life in general. I am damn well going to fight for all of this.

The disfigurement is going to be temporary, as is the pain. I don't like needles, but I can learn to live with them. The business that I have built up over the last twelve months will, hopefully, not suffer too much - I have great staff who I can hopefully back up and guide from home. I am very lucky in that my family situation is very strong and whilst I am worried about the effect all my treatment will have on my children, they are extremely strong individuals (already, at two and four!) and I have to believe they will be fine.

Hopefully I don't sound like I am trying too hard to talk myself into believing all of the above. At the bottom of my heart I do believe it, but the quaking in my boots is a bit distracting. It's almost like the damn disease is whispering at me. I am working very hard to tune that whispering out, to put the fear in a box and shut the lid, to keep my head above water. 

I will definitely benefit from being at work for a few days, finding distractions to keep me otherwise occupied and trying to feel normal. If nothing else, if I am at home for much longer. I will end up finding another DIY project - and we already have plumbers and electricians coming in next week as it is..... My husband might not forgive me if I starting changing anything else.

Just keep living, living, living....

It's like ripping a plaster off..

Telling people, I mean. Talk firmly, confidently, and "fast" and it seems to be a teeeeensy bit easier.

I do hate giving bad news though, and ruining my family's evening again.

My parents and sister now know though, so they can now start to prepare themselves for what is to come. All in all, it went well, but one of the things I found the hardest was telling my sister that she probably ought to have a chat with her GP in due course, once I have more information about the cancer itself, to find out whether she is also at risk.

Quite why I feel guilty I don't know. It isn't a contagious disease that one can pass on.

Well, apart from the fact of course that if it is a hereditary form of cancer my children will both be at risk as well. Now that I do feel awful about.

Would knowing that we might be prone to cancer have affected my decisions about having children? I honestly do not know.

Bearing in mind I shall be going onto Tamoxifen, I am incredibly grateful that we have been able to have two healthy children. Being on Tamoxifen suppresses Oestrogen and of course, you need Oestrogen to get pregnant. I will be on it for five years, which will make me nearly 39 by the time I am off it. I know that people have children in their late thirties and forties, but it will be too late for me.

By the time I am forty, I would like to be clear of this horrid disease, off the drugs, and planning a mid life crisis trip to Vegas.

Who's coming with me?